Today was another really low key day. I’m having a lot of residual pain from the tooth extraction on Monday and It’s been waking me up at night every couple of hours. Rotating through Tylenol and Advil but and getting some relief, but man it’s unpleasant.
I’m still beat from the last week. It’s been challenging at times to explain to people that even though I look look I’m well on the outside, on the inside my body is having a really hard time keeping up.
I have really low red, white and platelet blood counts that are hovering around the bottom baseline, after slowly trending downward over the last couple of months from already low starting points (See My Count Chart If you’re a numbers nerd like me).
This appears to be a result of dormant marrow activity combined with TKI treatments. We are locked in a holding pattern with my TKI which I have a hematological toxicity to, but I need to keep taking every day. The drug’s job is keep the leukaemia suppressed, but it suppresses my blood counts as a result of the toxicity. Over time we’ve worked out this very small dosage of the drug that I can tolerate. It is high enough to suppress some of the leukaemic activity, but low enough to keep my blood counts in the acceptable range to be an outpatient until transplant. This doesn’t mean I’m safe. I have a very low immune system, and to protect my health prior to transplant I’ll need to wear a mask in public so I don’t get sick. I also have a low platelet count which makes me susceptible to bruising and bleeding, and we have to continue to check the levels before dental and other invasive procedures to curb the risk of a bleeding event. My red counts which have tried to rally for the better part for the last year are starting to slip now as well which is giving me a fair bit of trouble with tiredness related to anemia.
Today I mostly just vegged out watching Netflix. My friend who also has appointments at PMH came to visit me as well which was nice. I picked up a few things for the condo to make it feel more like home and tried to just create a positive and welcoming space for me to spend some time in over the next few months. Thank you to all the people who have given me such lovely gifts to help make my space feel like home, so very thoughtful of you. You made a challenging experience easier. I had a great time setting everything up. It was a good distraction.